My 16 yr old daughter and Trigeminal Neuralgia

My daughter was just 15 years old when she woke up one day with a sore jaw accompanied by a painful burning sensation about 8 months ago. One of her upper back teeth has given her a lot of problems over the years requiring 2 root canals, so we figured it was infected and acting up again. I took her to an endodontist and he recommended that the tooth be extracted because of chronic problems with the tooth. We were given some antibiotics and pain meds and were sent on our way. The following week, I arranged to have the tooth extracted by an oral surgeon. After a week or so, instead of the pain decreasing, it was increasing and the burning sensation continued to grow worse and worse. The right side of her face began to feel as tho someone was jabbing her with needles and she told me that the tooth socket from the extracted tooth felt like someone was digging very deeply with a sharp object. I was told to take her to an ear, nose, throat doctor, which I did, but he could find nothing wrong. We ended up seeing several more doctors, dentists and oral surgeons until finally someone mentioned Trigeminal Neuralgia. We ended up going to a neurologist and he prescribed Tegretol, eventually working her up to 800 mgs/day. This seemed to work for about 3 months and now the pain is back worse than ever. She has excruciating headaches every single day, the right side of her jaw, lip, nostril and roof of her mouth burn. She said it feels like someone is holding an internal match all along the right side of her face. Her teeth hurt, her gums burn, she has stabbing pain in her ear and sometimes, tingling on the right side of her lips. The neurologist added 300mgs of Neurontin daily, but it is having no effect on her pain level. I have had to take her to the ER 5 times in the past 7 months so she could get Dilaudid in her IV, which would at least provide her with a few hours of relief from the horrendous pain. She tells me that she experiences pain on a constant basis, but at times, it becomes unbearable. She takes Hydrocodone when the pain gets that bad. The problem is, here lately, she is in unbearable pain every single day and I am at my wit's end. She does online schooling because this condition has made it virtually impossible to sit in a classroom setting all day, but even though she is at home, her high levels of pain have made it extremely difficult for her to do school work. I am really, really afraid for her future and it is killing me inside to see her going through such agony! No 16 year old girl wants to live a life like this! She is such a sweet girl, no drugs, alcohol, no partying, smoking, anything at all like that. She used to be a wonderful student with a marked skill for creative writing and now she can't even do that! My question is this: Since she has constant pain, can this still be TN? I have read that TN sufferers have intermittent pain, but my daughter experiences pain all the time, at least on some level. Any advice, help, suggestions, words of encouragement, ANYTHING, would be so very much appreciated. Thank you.

TN is a diagnosis made by listening to the patient. MRIs are done to rule out other problems (MS or brain tumor, etc) or to look for a blood vessel or vein pressing on the TN nerve. Blood tests may also be done to rule out other problems.

One suggestion is to keep a pain journal -- where it hurts, how it feels (sharp, stabbing, burning, constant, intermittent), when it happens, do certain things seem to trigger the pain, length of time it hurts. I know when my TN first started I would have described it as "constant" -- but in questioning with the doctor -- in truth it was happening intermittently -- but over and over again which is why I thought it was constant.

There are different types of facial pain. A good resource is the book "Striking Back" -- you can find that on Amazon or at the Facial Pain Association website. It has lots of valuable information and goes thru the different types of TN, the medications, the surgeries, and the alternative therapies available.

The correct diagnosis is important and unfortunately because facial pain (especially in children) is considered "rare" by the medical community -- many doctors don't have the expertise. Personally I went thru 5 doctors before I found #6 -- the Facial Pain specialist who helped me.

A Facial Pain specialist can be found at a large teaching hospital. They are doctors that deal with Facial Pain on a daily basis.

I also sent you a private message with some specific information about pediatric TN that I hope will help you.

There IS hope -- it's just finding the right doctor that can help your daughter!

Thank you for your response. Ironically, a friend of mine just mailed that book to me and it arrived Saturday. I have been reading and rereading page after page of useful information. My daughter's neurologist just bumped her up to 900 mgs/day of Neurontin from 300 mgs, so we will see if it makes a difference. She has had CT Scans and MRIs to rule out tumors and whatnot, so I guess now we need to find a doctor who can determine where the pain is coming from. My health insurance isn't very good, but I will be able to add her to my husband's policy at the beginning of the year and then we will have so many more options open to us as far as which doctors will see us. I just have to try and find a way to keep her comfortable until then. Thank you again and I will come back and give updates when possible.

I m sorry to read about ur daughter suffering from TN. I had suffered at the age of 17 on right side of face and my whole life had changed. As if this was not enough I suffered on left side of face after sometime.
Right side has been treated with surgery both 2nd & 3rd division of trigeminal nerve has been cut off with the result that no Pain now but also permanent numbness.
The left side is controlled with tegretol & neurontin.
Your daughter will have spontaneous remission lasting for months or even a year. But the pain does come back.
I suggest she being young should go for MRI OF the 5th nerve to trace if any blood vessel is pressing the nerve. If so she should go for MVD which can give her long term relief say between 5 to 10 years or may be permanent.
I wish her well and pray for her recovery.
Yakub

it sounds as if your daughter actually has atypical trigeminal neuralgia which has symptoms of constant burning pain with intermittent sharp pains.MRI should be done to rule out any tumors or vessel constriction which is unlikely due to the constant pain. some meds to try are trileptal,baclofen,elavil, and a few other antidepressants as well as anti epliectic(sp?) meds. the opiods such as dilaudid and vicodin only work to lessen the reaction to pain but doesnt diminish the actual pain. i wish your daughter well. also be wary of any docs who recommend surgery as a first option. with atypical trigeminal neuralgia surgery does not have good results.

Just now seeing your post and I hope you see this reply or someone who knows you does. I have had TN and ATN for 8 years--going on 9. Had many treatments, meds, surgeries. I am so sorry for your daughter. Shouldn't have to happen to someone so young. There may still be a way for her to lead a more functional life. Don't know where you live in the US, but if you have the means to get to University of Illinois--Chicago and see a
neurosurgeon by the name of Dr. Slavin---it would be great. I did just that aafter finding out about him on one of the TN forums. I was at my wits end with options, not able to do much of anything. Wonderful, brilliant doctor, and very compassionate. Have you looked into the option of a neurostimulator? Anyway--this surgeon may be able to offer you some possible treatments that might help--to include a neurostimulator. I have one and it has made my life with TN and ATN much better. Still on meds and still have bad days, but also have some functional days. Hope you see this and it helps. Good luck!

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